Friday, October 25, 2013

#Spoonies

Ever see one of those posts people plop onto Facebook where it says someone you may know may have an invisible disability of some sort? Most of it is like, anxiety, depression, fibromyalgia or other chronic and sometimes debilitating ailments. As I've written many times before about my dysmenorrhea, I've gotten to the point where I can no longer live with it any longer. These days, it's not only the pain from dysmenorrhea, it triggers my sciatica pain as well. Double whammy. I am not willing to give up 2-3 days of my life per month (which is when the pain is excruciating) in order to nurse this condition or end up in the hospital with Dilaudid -- a medicine ten times stronger than morphine. The main side effect: death from respiratory depression. At that point of pain, you're begging for death. The other night, I watched the clock slip hour by hour as I screamed in pain. 10 o'clock...11 o'clock...1 o'clock...4 o'clock. Madelene finally said, "Let's go." The problem with carting me up to the ER was, how will I make it up there if my condition makes me use the restroom every FIVE minutes? That's not even an exaggeration. When I got up to the ER, the doctors and nurses could not even believe the pain I was in. Sadly, not even the strongest medication could relieve me. I was on my 12th hour of excruciating pain. They wanted to double my dosage of Dilaudid, knowing I already had oxycodone in my system. Side note: I never understand why people want these types of prescription drugs to "get high" with --- because for me, it NEVER gets me high. It usually levels me out to normalcy - a life without pain where I'm a functioning human being. No highs ever. Nothing works anymore. You could pump heroin into my bloodstream and that wouldn't even phase me.

A living hell nobody knows about.

What are "spoonies"?

During the rest of the month when I am "fine" -- I live a very fulfilling life full of family, friends and outings. I enjoy myself most of the time and enjoy life as much as I can. I know that it's all going to come to a halt once my pain knocks on the door, so I try to enjoy every single minute of those beautiful breaks. I went Twitter to search for #chronicpain. I saw people with chronic pain also hashtagged #spoonies. When I looked it up on Google, it described someone who is enamored in a silly or sentimental way. But when I dug deeper, it described people who live with chronic illnesses, such as myself. We don't look sick. We don't look like we live a life full of misery. We usually look happy and healthy on the outside -- even when we're in pain. That's why many of the medical staffers in hospitals don't take "us" seriously, because they strictly go by the good ol' pain scale face chart as seen above. For me, personally speaking, I try not to bog down my friends with my ailments and illnesses, and if I do, I try to make light of it, telling them that I have an assigned room at the hospital where they know me by first name. "Hey Deb, welcome back," the nurses say as I'm wheeled to my room. It's actually quite true and I always make light of it, I never get offended. I do know some of the staff there already. They even know that I hate being on any type of narcotics and always beg for Toradol (an anti-inflammatory). I wish I could just pop two Advils. That would help, if it weren't for my constant stomach bleeding. So now, I'm pumped up with the highest levels of narcs...and I hate it.

After the storm usually comes another cloud: depression. This is when I reflect of what I just went through and all the events I may have missed. This is when I sometimes wish my life would end. I start anticipating next year's vacation plan: "Will it be during that painful time?" Oddly enough and by God's grace, usually my vacation plans are never during that time. I lucked out, but I'm worried about this June's getaway. It's more than a six hour drive and with the excruciating pain and a five minute increment of peeing, I'm not sure that's feasible. So I kind of drift off into a depressive phase which I usually snap out of -- because there's not much time left until the next round. So I make the best of those pain-free days and try to cram everything in at once. Who knows - I may not get a break one day. I did come to a huge decision that was not easy to make. I'm removing my uterus which is the culprit for all my triggered pain. I don't have any fibroids or enlargements -- it's an overactive uterus that wreaks havoc on my entire system, making my sciatica go wild and leaving me literally paralyzed. No more. I'm done. Hopefully this surgery will be my last visit to the hospital in a very long time, until I need knew 'gels' for my degenerative disc disease. A whole other can-o-beans to deal with.

I'm writing about this today because there are so many other people like me living with some type of invisible disability. They're are a lot of people who never talk about it at all. They don't want to be associated with something like, a "mental disorder" or "chronic illness" -- they want to live a normal life. Who doesn't? Perhaps living the way I do makes me appreciate every second and every hour of those good days. In fact, I know it does. At times, I can even be thankful for these hard times because without them, maybe I would take my "good days" for granted. I don't know. When it's a pain free day, I am on a euphoric high. Just sitting outside with a cup of coffee feeling nothing but the sun on my face is usually one of the best days of my life. You know how they say you have to have lived in poverty in order to appreciate wealth? Same concept with pain. So today, I am going to enjoy every. single. second. of being pain free. If you're a "spoonie" like me, Google it or look up the hashtag, #spoonie on Twitter. You'll be surprised that you're not alone. It doesn't have to be all about physical chronic pain, it can mean depression and anxiety disorders as well. And now, for my cup of coffee with my best friend. Hope everyone feels great today.